It blew me away

Meeting so many of you face-to-face was a pleasure and I am grateful to the organizers of the conference for inviting me.  There were some pretty famous CLL experts as well at the meeting.  The most treasured moment for me was when it was announced that conference was dedicated to the memory of PC and other patients.  People stood up and gave a standing ovation.  Wow!  He would have been so proud.

Here are the slides and text of my talk.  I am afraid it all sounds a bit tame and dull when you read it here.  You had to be there to get the sense of how empowered this crowd was, how much passion and solidarity there was in this patient group.  This was my very first speech to a CLL group - and I am very glad I accepted the invitation.  It has given me a new lease on energy.


Thank you for that kind introduction, and thank you for giving me the opportunity to speak at this forum.  It is both an honor and a pleasure.

There is an error in the short bio of me in the brochure. While I am not a professor of immunohematology at Southampton UK, a very good friend and mentor is the genuine article, the real professor of immunohematology at Southampton.  Terry Hamblin requires no introduction in any CLL crowd.  Please join me in wishing Terry good healing and a fast recovery as he goes through his second chemotherapy session.

Back in the 70’s there was a book called “Future Shock” by Alvin Toffler.  The author talked about information overload and things spinning out of control when we have to face rate of change that is ever accelerating. 

If Mr. Toffler thought things were changing too fast back in the 70’s, all I can say is he ain’t seen nothing yet!  70’s feel positively slow paced  compared to what is going on in the world right now.  Today I would like to speak to you about information overload in the CLL world.  I would like to propose to you that now more than ever, patient education and advocacy plays a crucial role keeping patients’ welfare and agendas firmly in focus.

Back then, a simpler time and a simpler cancer - or so we thought. Gone are the days when Watch & Wait is the obvious choice for all newly diagnosed patients, to be followed down the road by a prescription for chlorambucil pills when palliative measures were needed.  Cheap and automated blood tests had not been invented, and back then there was a whole lot less “watch” and a lot more “wait”.

At a time when we did not know much about B-cells - a 1960 textbook described B-cells as small, unremarkable cells of unknown function - it is little wonder CLL was considered “a good cancer”.  After all, people did not die immediately after diagnosis writhing in dramatic pain! It was the “old man’s disease” back when a sixty year old man was definitely “old”.  I don’t know too many sixty year olds who automatically classify themselves as old anymore.

We are also talking of an age where the social contract between physician and patient was very different.  There were no HMOs, no complicated insurance systems.  The man wearing the white coat was admired, respected, trusted without question.  Often his role was not just that of a physician but also a social worker, a psychologist, good neighbor and father confessor. 

Not too many of us enjoy that kind of a relationship anymore with our doctors.  Who has the time? As medicine became more of a business with emphasis on efficiency, bottom line profits and cost control, the inevitable squeeze on time has taken a toll on this once precious one-on-one contract between doctor and patient.  At least in the USA a very litigious society has made it impossible for any one to stay naively idealistic for too long.

And then Al Gore invented the internet. (You think?) And the world as we know it changed forever.

It became possible for people spread out over the whole world to gather together in cyber communities and share their information, view points.  My organization CLL Topics is a perfect example of what the internet has made possible.  I have “known” many of you in the audience for years, even though this is the first time I am meeting most of you.  Many of you are closer to me than my biologic family. 

An article published on CLL Topics is read and discussed by thousands of patients around the world literally hours after we go to press.  The internet is a hugely powerful medium.  As with all things powerful, there is possibility for good or evil with this technology.  For every legitimate and credible patient education and advocacy organization, there are a zillion sleazy outfits willing to sell you anything from happiness in a little blue pill and a no hassle cure for your incurable cancer.  More than ever, “Buyer Beware” is the best advice I can give you.

Campath and Rituxan have changed the landscape of CLL therapy.  There is reason to hope these and next generation monoclonal drugs in combination with more conventional chemotherapy drugs will translate into increased overall survival.  This has already happened in NHL, witness the recent unequivocal comparisons between CHOP and R-CHOP.  A rigorous double arm study in Germany has confirmed FCR works better than FC in CLL patients, with better response statistics and longer remissions.

Not long ago chlorambucil was the gold standard. Now we have a bewildering array of therapy choices.  While research documenting the explosion in our understanding of the disease, and better options available to combat it are wonderful to behold, there is a growing disconnect between this cutting edge science and the actual clinical practice of it at the local level.

No doubt expert institutions in North America and elsewhere are able to respond in real time to the rapid changes in our understanding of new drugs, new prognostic information, risk-adapted therapy strategies that maximize bang for the buck.

But the vast majority of patients do not have access to expert centers or experts.  Especially in the US, majority of patients are treated by over-worked general oncology practitioners at the local level. Many of them graduated from medical school well before Rituxan was a gleam in Genentech’s eye.  They may see a couple of CLL cases each year, lost in the crowd of more common solid cancer patients.  Even hematologists see a bewildering variety of acute leukemia and lymphoma cases, the odd CLL patient gets the speech about it being the “good cancer to have”, told to go home and relax and stop bothering the busy doctor.

As a patient advocate, I would like to draw your attention to the increasing confusion that patients - and all too often, their local oncologists - are experiencing when it comes to therapy choices.  When it comes to state of the art management of this erstwhile “good cancer”, gentlemen, it is a jungle out there! And your patients are paying the price for this confusion and information overload.

Real-time and well publicized “Best Practices” guidance will save lives, there can be no doubt about that.  As patients, we march to a faster paced drum beat, our very lives depend on rapid percolation of information from the experts down to the local level.  Our patients are ticking time bombs in that sense.  Since CLL Topics is an international organization - we have members in more than 80 countries - I tried to find pictures of marching bombs with different country flags, but the only ones with short fuses were the ones with the American flag.  In keeping with the stereotype persona of yanks, I suppose.

An article that I read early in my CLL career and one that greatly influenced my thinking  was aptly titled “Prognosis at Diagnosis”.  This article written by my wonderful friends at Mayo Clinic brought to the forefront the modern approach to CLL, with the full weight and prestige of the Mayo Clinic behind it.

No longer is this a disease with slam dunk game plan and one-size-fits-all therapy choices.  We now know a lot more about what makes CLL tick.  We can actually optimize the game plan for individual patients by using risk adjusted therapy choices.

Recently, I counseled a patient whose staging was changed from a friendly Rai Stage 0 to a scary Rai Stage 4 on the basis of one number in one CBC report.  It seemed that the patient had a platelet count of 97.  100 is the lower cut-off for healthy platelet count range, and based on this single number the strip-mall oncologist diagnosed thrombocytopenia, mandatory Rai stage 4 diagnosis and recommended full strength FCR therapy immediately.

I call this doctoring by the numbers.  It did not matter that platelet counts are notorious for inaccuracy (platelets tend to clump and the machine counts a clump of several platelets as one platelet).  There was no adenopathy, no B-symptoms, nothing else to suggest things had gone to hell in a hand basket. When pressed for time, it is easier to make decisions based on numbers than putting brain in gear.  I am glad to report my friend avoided being a victim of information overload, a second CBC done the next week after my prodding showed platelet count at 107.  Phew.  But I want you to avoid making the same mistake.  107 is not significantly more than the cutoff number of 100, and the trend in my friend’s numbers showed a gradual downward slope.  He will need help down the road, but this is not a 4-alarm emergency.  Not yet.

It bothers me that newly diagnosed CLL patients get little if any guidance on how they can help themselves.  By my rough calculation the percentage of doctors who warn their CLL patients about the increased risk of skin cancer is less than 5%.  In spite of repeat Best Practices recommendations from experts on the risk of viral reactivation, patients continue to get treated with T-cell depleting drugs such as fludarabine and Campath with not a thought about a painful attack of shingles.  Valtrex has become almost a maintenance drug; long term use to prevent genital herpes is pretty well established.  How about considering its use in CLL patients being treated with deeply immune suppressive therapies?

My husband had a particularly aggressive form of CLL.  He died last year due to infectious complications in the process of a stem cell transplant.  We came so close to beating back this incurable cancer, getting rid of the CLL sword hanging over his head for seven years.  But it was not to be. 

His death and my personal tragedy have not soured me on the technology of transplants.  Mini allo transplants have come a long way.  A recent European consensus report suggested it might be time to consider mini allo stem cell transplants for high risk patients in their first remission.  For these guys the tea leaves are easy to read, there is not much to be gained by W&W, they are better off using the window of opportunity presented their first and perhaps best ever remission.  I look forward to similar consensus reports seconding this approach for US and Canadian patients. It is time, we need our expert transplanters to step up to the plate and exercise leadership.

We can wax nostalgic all we want about the good old days when doctors were more like Marcus Welby and patients were well behaved, respectful and easy to treat.  We live in a different world, and both patients and doctors have to adapt to this new paradigm.

I see it as a partnership, with rights and responsibilities on both sides of the examination table.  Patients have most skin in this game - there can be no question about that.  They deserve to be heard, they deserve respect. This is a bare minimum and if you cannot work that out with your doctor I suggest you get yourself a new one. 

At the other end of the sharp infusion needle, patients need to be aware their doctors are struggling with time constraints that are often beyond their control.  Your responsibility is to be well organized with your questions.  Any patient that goes in “cold” into a medical appointment is wasting the precious 15 minutes of consultation time.  CLL Topics provides members with a template chart program where patients can record their historical blood test results so that trends can be seen at a glance without having to shuffle through several thick files of paper.

Respect is a fragile thing, and it cuts both ways.  If you go in to see your oncologist right after reading about this miracle raw veggie diet that cured a cancer patient some where and you bug your doctor about its value in your case, don’t be surprised if he does not take your questions and suggestions seriously in the future.  Be warned: you are judged by the “facts’ you buy into, and there is plenty of snake oil out there.  Cancer patients are a vulnerable lot, and there are plenty of people who are willing to take advantage of that.

We are all familiar (or we should be!) with the modern prognostic indicators such as IgVH, FISH, CD38 etc.  But there are several politically not quite so correct prognostic indicators that are almost as important.  Among them are a certain level of skepticism when reading stuff on internet chat rooms, hanging on to your wallet when it seems too good to be true, a willingness to learn and take control of your own healthcare, never letting your wishful thinking getting in the way of pragmatic decision making, and most importantly, realizing this is an incurable cancer.  What you (or your doctor) do not know can kill you - or at the very least subtract several good years from your life.

It might seem to you that the deck is stacked against individual patients, you are out of your weight class in this partnership.  But I want to tell you it is possible to establish trust and a good relationship - if you are willing to work for it.  And as a card carrying CLL patient, it is important to have a willing and able medical team in your corner.

There is only one route to improved therapies for CLL patients, perhaps even a cure.  And that involves well conducted clinical trials with live human patients.  Mice and glassware experiments can only go so far.

It often takes years for researchers to recruit sufficient patients  and that adds to the cost in time and money.  Recruitment rates are plummeting.  Only ones who seem to be able to recruit are drug company sponsored trials that hire professional head hunters who get paid thousands of dollars per patient they recruit.

There are many road-blocks to patient participation.  Protocols are getting ever more complicated, it is next to impossible for layperson patients to give informed consent.  Widely publicized scandals create a lack of trust.  Stressed out local oncologists have little to gain by recommending their patients to clinical trials at the expert centers.

My pet peeve is rarely discussed.  Lack of respect for patients.  It is as if they threw a party but forgot to tell the guests about it.  Every one has a seat at the table, researchers, regulatory agencies, drug companies, investors with money riding on the trial.  Every one other than patients who risk their lives by signing on the dotted line. 

A while back I surprised an expert and a good friend when I asked him why it is that published articles reporting on results of clinical trials almost never thank the patients who made the trial possible in the first place.  At the end of the article the authors thank their institutions, other colleagues, even the secretary that did the manuscript work.  Everyone except the patients.  We cannot fix any of the existing problems with clinical trial recruitment until that attitude changes. Patients have more skin in this game than anyone.  We deserve a seat at the table, we deserve to be heard and respected, if this process is going to work.

Prior to the egalitarian effects of the internet, medical information was rarely accessible to the layperson.  Continuing Medical Education (CME) was a one way street, delivered by the experts to the local providers of healthcare.  Perhaps this worked adequately when research moved at a slower pace.

But the present explosion of information has made for huge gaps in this conventional approach.  Cutting edge science is taking longer to travel from the expert to the local provider, and not keeping pace with the actual use of the drugs, often on an ad-hoc and off-label basis.  Much of the precious monitoring information is not being captured for post marketing surveillance programs by over-worked and under-trained local practitioners.

I would like you to consider a new paradigm, an unofficial pathway to CME that is happening with greater efficiency.  Every time we come across a “Best Practices” paper from an acknowledged expert in prestigious peer-reviewed journal, we review it on our website.  We work at internet speed, our reviews are often up on our website months before the hard copy of the journal makes its way to the local oncologist.  Our strength lies in our ability to translate medical jargon into plain English, and our very wide readership in the patient community.  After reading our reviews, thousands of our members request copies of the original articles, print them out, and present them to their local oncologists at their next appointment. 

This is CME with a modern twist, from the bottom up. I strongly urge physicians not to resent this or see it as encroachment on their turf.  This can be the basis of a beautiful friendship between you and your patient.  Imagine how easy it is to teach a motivated student, one that is going to be a pleasure to work with.

Patient advocacy groups such as CLL Topics also help in the process of long term monitoring and surveillance of potential adverse effects.  Patients write to us, very frequently.  I answer close to a thousand substantive emails each month, members looking for help that they were not able to get from their local healthcare provider.  As my contacts within the researcher and expert community have grown, I am able to bring special situations to their awareness, make introductions when I can.

I am happy to report, what used to be my short list of “good guys”, experts that would respond to our request for often times pro-bono help is not so short any more.  I hope to keep improving on this front, so please do not hit the delete button the next time you hear from CLL Topics.  We talk to many of your patients, we understand their needs and we understand yours.  Patient advocates are the quintessential good faith broker that can / must work effectively with both sides.

I think most of us can agree we are certainly living in interesting times and sometimes the sheer pace of it all can get to be quite a challenge.  Information is no longer a sip at the drinking fountain, it is a busted fire hydrant blasting you off of your feet.

So, if the CLL information overload is adding to your sense of insecurity and you are feeling less than spunky,

And you just can’t seem to catch a break; every time you think you are going to kick that perfect field goal Lucy keeps yanking away the football at the last moment..

If you think professional articles are not written in English, you are right. They are written in a language called Jargoneese, and only the guys who have learned the right handshake in medical school can understand it.

If you are smart enough and you can generally tell your elbow from a hole in the ground, but that is not the case when it comes to FISH and IgVH gene mutation results..

Too many choices have you flummoxed and wondering what the heck you should do, we can help you get all those silly ducks in a row

Provided you do your share of the heavy lifting. For starters, can you tell the difference between a beer-belly and a swollen spleen?

Hint: A beer belly is just a beer belly, not clinical manifestation of the dreaded swollen spleen.  If this is your situation, the right prescription is fewer beers and more exercise, not a splenectomy.

CLL diagnosis is a wake up call, a swift kick you know where, it is time to quit being a couch potato.

And I don’t want to hear any of your guff about me taking my own advice! A patient told me Oprah and I have more than a few things in common: we both use our first names only most of the time, we both have a built in tan, we both need to lost a bit of weight, and we both love telling the rest of the world exactly what they should do to make their lives better..

Seriously, I have long felt “Watch & Wait” is too passive.  It should be “Watch & Get Ready”.  Get ready to take on this disease and beat it.  If you smoke, quit.  If you are overweight, you now have a good reason to get into shape. If you are over-stressed, take a good hard look at your life and decide what is really important to you.

Get out those sneakers and get ready to fight for your life.  You will deal with CLL a whole lot better if you are in generally good shape.

All those things your mother told you - good food, plenty of rest, avoiding illnesses, regular and vigorous exercise - all these are now even more important. 

Many of the drugs used to treat CLL are pretty tough on your heart, lungs, kidneys and liver.  Patients who are fighting on more than one front are much less likely to do well.

If you run outside, watch out for excessive UV exposure.  I have lost too many CLL friends to metastasized skin cancer. Remember, only mad dogs and Englishmen go out into the noon day sun. And there are very few Englishmen in this audience, I will wager.

Your doctors obviously play an important role in keeping you healthy.  But it is time patients started taking some responsibility for themselves. 

Infections are the single biggest risk factor CLL patients face.  More patients die from pneumonia and pulmonary infections that any other single item. The person who is most important in preventing infections is YOU.

A little common sense, a bit of social distancing when dealing with sick relatives or friends,  germ factories masquerading as ever so cute grandkids, a whole lot of hand washing and alcohol gel bottles, making sure everyone in your family gets the flu shot each season - all of this can add years of healthier life even with CLL.

I get a kick out of it when drug company reps call me and ask for stuff - just get my secretary or staff to take care of it.

With PC gone, CLL Topics is manned by me and our Aussie dog Jasper who insists on barking loudly whenever the phone rings. I guess she thinks she is the receptionist.  Our daughter has stepped into her father’s shoes and is our new unpaid webmaster.  My wonderful son-in-law (equally unpaid) takes care of the business stuff.

We have been around for 6 years now.  If you type CLL Patients into Google, CLL Topics grabs the top two or more citations.  This is the case with just about all combinations of words, CLL and Rituxan, CLL and fludarabine, CLL and whatever. We have a reputation for credible information and we reach thousands of patients round the world.

I hope you will visit our flagship website CLL Topics, our new Updates site that allows two way discussions, and last but not least, Harvey’s Journal.  Harvey was PC’s pseudonym (he and I both liked the old classic Jimmy Stewart movie with that name) and this journal recounts his transplant experience.  I will warn you, this is not pleasant night time reading. No rose tinted glasses to distort the journey of our fallen hero.

The conference organizers were kind enough to include PC in the list of patients to whose memory this conference is dedicated.

I can do no less.

He was a terrific father, a much beloved husband, an over-the-top dog lover; and he felt he was at his best, top of his game, when he was being your advocate. 

If you liked the gentle hues and lovely artwork on CLL Topics, if you felt there was an artistic touch to the site that softened the harsh realities of CLL, you were responding to the spirit and soul of my gentle husband.

His online pseudonym was “Harvey”, named after the six foot tall imaginary rabbit in the old James Stewart movie of the same name.  Those of you who have seen this wonderful movie may be able to see an ever so debonair six foot tall rabbit standing next to me as I conclude my talk.  He and I both thank you for your time.